Our second-oldest grandson, the Aviator (otherwise known as the Baker), made his first solo flight last week!

And today, Grace was cleared to take off from the hospital and move into their new apartment. Not home, but home-away-from-home. She walked off the floor and into the outside world for the first time in what? More than five weeks?

What does this mean? Here's what I think is right:

  • She will return to the hospital for "clinics" a minimum of three times per week, one purpose of which is to make sure the delicate dance between her healing body and her medications keeps on track. Another is to keep checking on her liver and all those other bodily systems that need to be working right.
  • She will be receiving nutrition and all her medications through her NG tube; the container's in her backpack, which looks mighty heavy for such a little girl.
  • Of course she will continue to be encouraged to eat food by mouth. The other day she managed a half a piece of bacon and some Skittles!
  • Her central line is still necessary for testing and other things that might come up.
  • Her parents are now responsible for administering a long and confusing list of medications. They're engineers, and probably have a spreadsheet or some such to help.
  • There will be a bunch of new rules and routines to get accustomed to.
  • Prayers are still very much needed!

Speaking of flying, Grace's two older sisters took advantage of the Boston connection to participate in MIT's Spark program this weekend!

Posted by sursumcorda on Sunday, March 17, 2024 at 6:45 pm | Edit
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Yes. We're working on a spreadsheet or chart of some kind - the chart they gave us (even after we fixed the typos) is not the most efficient, and would be easy to make mistakes (lots of the meds they list by mg, when we really want everything by my, and not have to do the calculations every time.

One thing we are trying tonight for the first time is to put additional water in her food "feeds", and then upping the rate (from 30 to 40 ml/hour) so then we don't have to manually put water in her tube, which is harder to get the rate right.

We did skip her Ativan and Zofran tonight since I've never been convinced they did much, though we'll do her morning dose to do a bit of weaning, and then see how that goes.

Posted by Jon Daley on Sunday, March 17, 2024 at 10:48 pm

Thanks for the comment, Jon.

Posted by SursumCorda on Monday, March 18, 2024 at 8:26 am

SUCH good news! Things are definitely looking up, even if it's still a long way out of the woods.

Posted by Grace Kone on Monday, March 18, 2024 at 11:19 am
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